Author Topic: It's over....but when is it over?  (Read 6699 times)

susierg

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It's over....but when is it over?
« on: July 30, 2012, 08:50:04 am »
Tomorrow will be one week since my surgery.  All went well....tumor completely removed.  Not sure if my hearing will return or not yet.  Doctors are optimistic and tell me it could take weeks for the swelling, fluids, etc to reside.  They did tell me the monitor showed a significant decrease during surgery, but that it came back before surgery was over.  No facial issues, thank goodness!  I guess I just thought I would be feeling better by now.  I came home from the hospital Saturday Morning after a 5 day stay.  The 1st couple of days were a living hell.  Dizziness, nausea, vomiting but had been warned and expecting it.  I'm up and walking several times a day, trying to do things for myself, but it is still very difficult.  Nausea has gotten better, but dizziness is still bad.  Everything seems to be leaning to the left.  Pain has been tolerable, with drugs.  I am trying so hard to be patient, but has never been one of my virtues.  I meet with my doctors on Wednesday.  Hopefully will get my stitches out then.  Guess I'm just looking for someone to tell me exactly when I will be able to do things by myself again....be able to walk without dizziness againn...sleep through the night again.
I am so grateful for the job my docs did and the nurses and staff at MD Anderson could not have been better!  Ashamed for the pitty party I'm throwing myself right now, but hoping that will pass soon as well.
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

CHD63

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Re: It's over....but when is it over?
« Reply #1 on: July 30, 2012, 09:36:50 am »
Hi there .....

It doesn't sound to me like you are having a pity party.  You are just describing a fairly normal post-op period.  It sounds to me like you are really doing very well.  You should find the wobbliness going away fairly quickly if you take frequent walks in a safe environment.

I suspect the sleeplessness is most likely from the steroids.  Once they are totally out of your system you should sleep better.

Remember, this surgery was a tremendous assault to your body and specifically your brain so it takes awhile for all to heal.

My motto:  patience is a virtue (and I am not a patient person, either!! :))

Thoughts and prayers.

Clarice
Right MVD for trigeminal neuralgia, 1994, Pittsburgh, PA
Left retrosigmoid 2.6 cm AN removal, February, 2008, Duke U
Tumor regrew to 1.3 cm in February, 2011
Translab AN removal, May, 2011 at HEI, Friedman & Schwartz
Oticon Ponto Pro abutment implant at same time; processor added August, 2011

Chances3

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Re: It's over....but when is it over?
« Reply #2 on: July 30, 2012, 11:12:01 am »
Hi Susierg,

Great news about your surgery.  The body needs time, indeed you must be patient with your recovery.  Get in some walks, eat a balance diet and get some rest during the day.  You will see progress as time goes on.

leapyrtwins

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Re: It's over....but when is it over?
« Reply #3 on: July 30, 2012, 02:52:36 pm »
One week post op?

It definitely isn't over yet.  You just had major (brain) surgery.

Patience, patience.

Jan  :)
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

MDemisay

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Re: It's over....but when is it over?
« Reply #4 on: July 30, 2012, 03:36:45 pm »
Susierg,

It takes each of us depending on our age and how in shape we are a different amount of time to readjust from surgery, some people take longer than others.Take time for yourself and smell the roses in full bloom, read a book, take a slow walk. Take it easy......What you can do is drink more water, less of coffee and take longer walks to build up your strength. Don't be afraid to watch a sad movie, as you will find tears come more easily now. Drink more water as well to wash the drugs out of your system....The answer to your question is it never ends, there are adjustments that we all have to make to our lives after surgery they get easier with time.......Some day in 10 years time.....you will say oh that operation, I adjusted to that a long time ago....That was easy!

For now, it's ok to sniffle a little! We are all here for you to lean on, so lean already, we've all been there!

Mike
1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Jim Scott

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Re: It's over....but when is it over?
« Reply #5 on: July 31, 2012, 08:28:32 am »
Susie ~

In one sense, it is over...the surgery is done and you're recovering.  Fairly well, all things considered.  However, something like an acoustic neuroma and the removal surgery is somewhat life-altering.  A lot for some, just a bit for others.  The effects of the surgery are unique to the individual AN patient so one patient's experience, whether positive or not so much, cannot guarantee the same outcome for another AN patient.  The one constant in AN surgery recovery is that it is relatively slow and always a lot slower than we want it to be - because, like you, we want the experience to be over so we can 'move on with ours lives'.  I certainly felt that way (and I enjoyed a rapid recovery).  So does every AN patient recovering from surgery (or radiation, for that matter).  The AN and subsequent surgery is a huge disruption in our lives and any ensuing post-op complications are an impediment to our normal routines.

I insisted on driving (highways included) within a fortnight of my surgery - and did so.  My wife was a bit concerned so I belatedly asked my doctors permission to drive - and he gave it (unaware that I was already driving).  Fortunately, no problems arose.  Frankly, I pushed myself in a steely determination to 'get back to normal'.  I had a few bumps along the way but with some effort, managed to regain normalcy within a few weeks of my surgery.  26 FSR treatments 90 days later (preplanned as part of my doctors approach to killing the 4. 5 cm AN) were uneventful and sealed the fate of the remaining tumor.  That was six years ago.  I'm doing great and although the AN experience is a big part of my medical history, it has little impact on my daily life, today.   I remain active on the ANA forums to help encourage other AN patients with my story and whatever solace or advice I may be able to offer.  I'm confident that with the passage of time, your own efforts and a lot of patience fueled by the desire to have this AN experience behind you, you'll be fine.  Not as quickly or perhaps as completely as you might wish, but it will happen.  You're a week out of surgery.  By the time you're a month out, you should be much improved.  A year from now, you'll probably wonder what you were so worried about.  Five years from now you'll be asking: "AN?  What AN?   ;D

Take a deep breath, set your mind on recovering and getting your life back and be prepared to call on your reserves of patience.  Those efforts are usually rewarded with a sense of taking back control of the situation (your recovery) and moving in the right direction (healing, normalcy).  We want to advise and support you in this journey, Susie.  Please stay connected and allow us to encourage you as your recovery continues.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

susierg

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Re: It's over....but when is it over?
« Reply #6 on: July 31, 2012, 09:22:02 am »
Thanks everyone for words of encouragement and advice.  Things are starting to improve a bit everyday.  Walking is still difficult, but tredging on several times a day.  Living in Texas.....it's incredibly hot outside, so for the most part I'm just making laps around my house in the air conditioning.  I have post op appts tomorrow and hopefully will get re-assurance from my docs.  It always helps to hear you're doing as expected.  I've come off of my "pitty pot" and sucking it up with more determination to get through this quickly.  Thanks again for your support!!
4mm AN diagnosed 8/2007.  Watch and wait for 5 years.  5/2012 grew to 7x4x4.
Mid Fossa 7/2012 at MD Anderson, Houston,Tx
SSD but still hoping it will return.

Chances3

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Re: It's over....but when is it over?
« Reply #7 on: July 31, 2012, 09:52:42 am »
Try getting some walks in the evening before the sun sets if that time is a little cooler, or if the early mornings are cooler and your body can handle it.  The outside is good for your brain to start making the adjustments instead of the inside stimulation.  However, it's not imperative the first few weeks.  I like your attitude, keep fighting, it's worth it.

nftwoed

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Re: It's over....but when is it over?
« Reply #8 on: July 31, 2012, 12:19:21 pm »
Hi;

  I feel after the initial trauma and recovery of AN Tx, which will vary, most lives are permanently affected in some way.  I know of very few who do not report some lasting challenge or effect. Not meaning to be a kill joy here.
  You're doing well, and have come a long way, susierg! Good work. You'll get through this initial recovery in it's time. Probably, less so 'your' time.
  Best wishes for tomorrow's appts!

jaylogs

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Re: It's over....but when is it over?
« Reply #9 on: July 31, 2012, 01:54:15 pm »
Sorry to join in this late, but as everyone already said there is no pity party (well, maybe there is but that would be wayyyyyyyyyyyyyyyyyy down the road!) so it sounds like you are doing better.  Someone on here once said two steps forward, one back is pretty normal for a while, and that's the truth. So even if you do have setbacks, don't despair...it'll blow over! Let us know how the dr. appt went! Take care!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston

Cheryl R

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Re: It's over....but when is it over?
« Reply #10 on: July 31, 2012, 02:09:17 pm »
Susie, I have been thru 4 AN surgeries and every time it took a good 2 weeks to feel like there was going to be life again.    Then the improvement was slower but it all did get better.     There will be good days and be active then a down day or 2 for the body to catch up again.       Don't be over active just to prove you will have a "normal" life again.      I know well how it gets boring feeling some better but not enough to do as much as one wants to.   Plus there is an emotional factor from just going thru a major major surgery and feeling good for making it thru it and also down for not being up to feeling like you want.        The anesthesia and drugs plus the steroids whether you had just in the hospital or have some oral ones now too affects us for a time.
     Take your walks as able and hang in there.     Keep letting us know how you are doing.                 Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

lrobie

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Re: It's over....but when is it over?
« Reply #11 on: July 31, 2012, 02:51:33 pm »
I have to add that tomorrow is my two-week mark and I'm not feeling even close to getting over this dizzy, bobble, wonky-head feeling.  I'm not sure if I'm not doing what I'm supposed to, but I can't wait to feel like I haven't had six drinks! 

Lisa
6/2009 7mm x 4mm  W&W
8/2011 9.5mm x 5mm
2/2012 UPMC Follow-up , slight growth
Surgery on 7/18/12 w/Drs. Friedman & Schwartz (mid-fossa)
www.caringbridge.org/visit/lisarobie

Cheryl R

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Re: It's over....but when is it over?
« Reply #12 on: July 31, 2012, 03:42:11 pm »
Hi Lisa,   We all vary in our recovery and I can say in having the 4 surgeries each time was a bit different in how I felt post op.     Part also depends on the tumor size and location and how much compensation the brain had done pre op.    So walk as you can,rest alot,drink alot of liquids and water and be patient.     That last one is the hard part.                 I wish well all the new post surgery people even when don't say it on here.      It's not an easy time!
                                                Hugs to all of you!                  Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

HisFireFly

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Re: It's over....but when is it over?
« Reply #13 on: July 31, 2012, 03:48:47 pm »
Praying for an overwhelming sense of peace to wash over you as you recover bit by bit, day by day.

I think I will be much like you when I have my surgery, impatient and frustrated with myself and ready to move on.

We need to learn to give ourselves some slack and be thankful for small improvements.

Easier said than done!
Learning more each day about leaning into His everlasting arms.

pjb

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Re: It's over....but when is it over?
« Reply #14 on: August 01, 2012, 10:12:32 am »
I have to add that tomorrow is my two-week mark and I'm not feeling even close to getting over this dizzy, bobble, wonky-head feeling.  I'm not sure if I'm not doing what I'm supposed to, but I can't wait to feel like I haven't had six drinks! 

Lisa

Have you started Vestibular Therapy I haven't read the other posts it had helped me so much after surgery.

Best Wishes,
Diagnosed with a 1 cm. AN had Retrosigmoid
Approach surgery July of 2009, several problems after surgery.